Role of Shingles virus in triggering GCA - PMRGCAuk

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Role of Shingles virus in triggering GCA

Suzita76
Suzita76

Just a quick survey for GCA sufferers please.

As a former medical / biological researcher for most of my career before I retired a few years ago, I am lucky to still have access to ( and be able to understand) medical and research publications. I have passed on a number of recent papers to my GP and to my Rheumatology consultant (- very humbly, because it’s not good to appear to be a “ know-it-all”) and I’ve been surprised that they were not aware of much current research- I guess they don’t have the time!

One line of research that particularly caught my interest was indicating the role of Shingles virus in triggering GCA, which looked at temporal artery biopsy samples and found evidence of Shingles virus in 74% of samples- significant! I can send people links to the research if anyone is interested?

Still not sure that my diagnosis was correct ( in June 2017), but if it proves I do have GCA, then in my case, I am sure Shingles was the culprit, and I would like to lobby for Shingles vaccine to be offered in the U.K. much earlier than the current 70 ( which is far too late).

How many other people had an attack of Shingles before getting GCA I wonder?

Best wishes

17 Replies
DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Not me. Emotional and physical stress my trigger.

I had Shingles twice and both times in the right side of the head over the eye. First time was about four years ago, second time approx 12 months prior to being diagnosed with GCA.

I think there a link somewhere. The pain in right side of the head was in fact very similar to the pain I had with GCA, (although the GCA pain was much more severe); which was why at first I thought I had Shingles for the third time.

Funnily enough, the GCA pain was a lot worse on the right side of my head than the left.

Primarose
Primarose in reply to Primarose

I forgot to add that I have read articles linking the Shingles vaccine to GCA.

I've never had shingles as far as I know, unless it was an uncommonly mild bout that was never diagnosed and, from what I know about shingles, that is extremely unlikely. My GCA seemingly came out of the blue, but I had been feeling anxious and depressed about various matters for a while, accompanied by general feelings of unwellness and fatigue - both of which got much worse once the GCA and PMR really took hold.

PMRpro
PMRproAmbassador

There are a lot of weaknesses in that research - and it hadn't been confirmed by any other groups when I read it. As I'm sure you are very well aware correlation is not causation! However - one of the listed adverse effects of the first shingles vaccine is PMR. But I'd also suggest it perhaps isn't the SHINGLES vaccine that is important but the chicken pox vaccine in childhood. If that is a link then the incidence of PMR/GCA should fall dramatically as the generation who have had CP vaccine get old.

I imagine almost all of us of this age had chicken pox as children and it is common for the virus to become dormant in various nerve endings in the body which in some people then wake up at come later date and cause shingles. No doubt it is dormant in other areas too. Having shingles is probably a sign of an immune system that is deranged in some way - and possibly an attack of shingles shortly before PMR or GCA develops is due to the underlying autoimmune cause of the vasculitis?

And for the record, I had CP as a child but have not yet developed shingles.

Pongo13
Pongo13 in reply to PMRpro

PMRpro - I was thinking of asking for shingles vaccination, and indeed paying for it (as I am a tad young to get on NHS) but having read all this thread I'm wondering whether I should leave well alone now! Having had recurring shingles since late 20's and sitting here today with blisters on arm that have decided to join up into one huge painful blister I'm in a quandary. What would your advice be? Thanks in advance (I know you can't tell me what to do but I do value your input).

PMRpro
PMRproAmbassador in reply to Pongo13

I honestly don't know. If you have recurrent shingles it might help. YOu should be on antivirals as soon as it starts...

Pongo13
Pongo13 in reply to PMRpro

I'm on the anti virals. Thanks for prompt response. I have a check up this week (a reward from NHS for being 60) so I will ask the nurse in the first instance. Cheers.

Hi Suzita,

I had the shingles vaccine 1-2 years before GCA.

ncbi.nlm.nih.gov/pmc/articl...

Here is an article that addresses a microbial association with GCA. Their research could not find a statistical difference between GCA tissue and the control group. That doesn’t mean it’s not there, more research is definitely needed.

Research needs grant money and that is another topic.

Hi

Yep I had eye shingles a few years ago and have never felt right since. Haven’t got GCA but diagnosed with PMR 12 months ago so I am absolutely certain that shingles was the start of all this ☹️

jamanetwork.com/journals/ja...

And then there is this. A woman successfully treated for GCA with antivirals. What a shame if it is this simple to treat and we have all been languishing in the grip of prednisone for years. I read about this in the beginning and asked for antivirals and was refused.

Personally I wouldn’t want a live vaccination anywhere near a body that has a tendency to attack itself due to confusion as to what is self and what is enemy. Interestingly over the years I’ve always acutely overreacted to all vaccines, even killed ones. I put mine down to decades of one stressful event after the other, chemo that caused a lot of inflammation in my circulatory system in 2004 and possibly one attack of Herpes simplex virus after the other. The latter may have just been triggered by the former issues.

Hidden
Hidden

I can confirm that my GCA (positive biopsy) followed almost immediately after shingles. I thought it was a post shingles body reaction at first! With ear,tooth,jaw & head, ache. Plus a sore throat & general body ache.

4 months prior to the shingles attack I had completed 30 weeks chemo. (5Fu) after an operation for colon cancer.

I reckon my immune system was hammered! Combined with family deaths it had too much stress to bear.

Do not have CGA, but did get the shingles vaccine right before PMR raised its ugly head!

Not me - never had a shingles vax and have GCA - like DL my PMR - which came first followed by GCA followed some years of emotional stress and an injury (not extreme) to my leg. I also had a very bad flu or similar virus a couple of years before what were probably my first symptoms. My mother also had GCA (never diagnosed at the time) and also never had shingles or the vax.

No relation between the two for me. I had shingles in my twenties and GCA in my seventies. A full fifty years apart.

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